During various medical appointments, including optician and dental appointments, the question has been asked, “So, how long have you had M.S.?” The ‘official’ answer is ‘since January 2018’, but that was simply the point at which I was diagnosed. The true answer is more difficult to pinpoint. I’m not alone in having probably had M.S. for quite some time – for example, the journalist Caroline Wyatt seems to have had it since the early 1990s but remained undiagnosed until 2015. Parts of her story really resonated with me – her symptoms, the length of time to diagnosis – and I have found that it helped me to know that I wasn’t the only one who struggled. I thought that recording my own experiences might be useful to someone (or, indeed, helpful to myself next time I have to recount my medical history to a new clinician). I’ll try to keep it short…ha. Have you seen my writing? I don’t do brevity, and I do do tangents. I’ll try, honestly.
Age 19: I was a second year undergraduate, away from home. I probably didn’t look after myself particularly well, but I wasn’t the only one. So when I went to my G.P. to complain about feeling constantly tired, I was given standard blood tests (F.B.C.s, U. & E.s) and when they came back within normal range, I was advised that I was most likely depressed, given a prescription for antidepressants, and told to come back in 4 weeks. So far, so standard early 1990s student experience. The antidepressants did make me feel more…motivated? I certainly had less of a low mood, but I was still exhausted and I was experiencing overt physical symptoms that were detrimental to my studies and my life in general. My right leg started to drag behind me like it was a truculent toddler being dragged to bed; my cognition and memory were impaired: I found reading really difficult, which was not ideal for a Philosophy and English student. Yet, my G.P. continued to insist I ‘had depression’. Eventually, I had to take a break from my studies and restart second year the following academic year.
Age 20: after a period of 6 months of rest and recovery, I restarted second year. It didn’t take that long – 6 weeks, perhaps? – until the exhaustion began again. Once again, back to the G.P. Once again, back on antidepressants. Once again, improved mood, but still exhausted. The other physical symptoms returned too, with the addition of speech difficulties. Sometimes I was too tired to be able to form a coherent sentence.
At this point, the G.P. I saw was a locum. She decided to do more, wider ranging blood tests, and when these came back, it appeared that at some point in my life I had contracted Coxackie B virus, therefore, she concluded, I had a post viral syndrome called M.E. At last I had a label – yes, M.E. was still known as ‘Yuppie Flu’, or (as my best friend put it, ‘ Lying in bed and having a cup of tea disease’) but at least it was something properly medical. Again, I would like to remind you, the reader, that it was still the early 1990s, I was young, exhausted, and ready to accept any diagnosis that wasn’t depression (there was still a fair amount of stigma about mental health issues back then).
With hindsight, although I’m still grateful that I was being taken seriously and not dismissed as a ‘typical student’, I think the G.P. might have jumped on the alternative diagnosis a little bit too soon. Perhaps M.E. should not have been diagnosed based on one finding of an antibody. But then, I’m saying that with the perspective of a middle-aged woman who has had a lot of education, including clinical. I’m more critical. More confident. And the body of knowledge is greater, and more accessible. I digress: it was what it was, and apparently, that was M.E. I withdrew from my course of studies entirely – my mind and body could not manage anything beyond the basics.
Over the following 3 years, I got better, then worse, then better, then worse…I didn’t move home – I stayed put in the university town where my friends ( and future first husband) were. And by the mid 1990s, I was married, and ‘better’. I moved back to Glasgow, and started another university course.
This is already becoming quite a long tale… let’s skip a few years to Part 2.